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Mally

Lung cancer

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Hi ive just recently had a left lung lobectomy and a wedge resection and it was found during surveillance for a sarcoma i had 4 yrs ago but this is a primary adenocarcinoma .they said because it was small and on the edge of the lung that it was at a curable stage. I received a call about the histology report that 20 lymph nodes were removed and that there was some cancer cells in 7 of them and that they will decide whether to do chemo or take the watch and wait approach ....anyone else had similar ?

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My nodes were all clear, so I have no experience. What did they say about how & when they will decide what to recommend to you? Was it a lobe or wedge that they took & if lobe, which one? How long ago? When is your next appointment? No matter what, you need to be part of the care decision. Make sure you are clear on what they are recommending & why.

Good luck & keep in touch!

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Mally,

I had a lobectomy of my upper left lung in February 2016 for a mass that was diagnosed as adenocarcinoma (no mutations).  Surgeons removed 10 lymph nodes and 7 had cancer cells.  I went through four rounds of chemo (cisplatin/alimta).  If you don't want to wait, or you don't like the treatment options provided by your team, get a second opinion.  

Hope this helps. 

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Mally,

Seven nodes with metastatic lung cancer?  In my experience, wait and watch is not a treatment plan for cancer discovered by pathology examination.

Have you consulted with a medical oncologist or has your case been handled by only a surgeon?  Post surgical chemotherapy is normally a standard of care after most if not all surgical resections.  If you have a medical oncologist, I'd nudge him or her into formulating a treatment plan pronto.  If the nudge doesn't have the desired effect, I'd find another post haste.

Even one cancer cell in one node can be a vast problem.  Keep us informed and welcome here.

Stay the course.

Tom

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I had the bottom lobe taken and near the top i had a 1.2cm nodule which was taken by a wedge resection on 5th jan.....i received a phone call telling me that what they took left clean borders but some cells found in 7 nodes out of the 20 they tested .....today i received an appointment in the mail to attend the oncology centre on jan 31st with a view of chemo so i was told before surgery that the cancer was at a curable stage and in a good place to remove but now the nodes are involved i feel really flat and depressed and could do with some hopeful stories of success plz..i had a sarcoma cancer removed from my leg 4 yrs ago so have lived in fear of that recurring and now this primary adenocarcinoma in my lung .

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Mally,

As I mentioned in my other post, I had lymph node involvement.  Seven of 10 had cancer, but they were able to get clear margins.  I followed with chemo and I've had three clear scans since then.  Don't give up!  You can beat this monster.

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Mally,

For me, one round = 1 day of treatment, and all of my chemo was outpatient.  Chemo days were long, though.  I started with lab work then to the infusion room so that the nurses could start IV fluids.  Once the oncologist saw me and reviewed the lab work, he'd sign off on chemo and they would start the chemo drugs.  Because I had fluids, two different drugs, steroids, and fluids each time, I was usually at the clinic for 7-8 hours.  I had three weeks between each treatment.

For better or worse, I could predict when the side effects would kick in.  I had chemo on Fridays and felt pretty good until Sunday, when the steroids wore off.  Fatigue and nausea kicked in on Sunday and were the worst on Tuesday.  By Wednesday, I started feeling good again.  The worst one for me was the last chemo - it took a few extra days to feel normal again. 

I hope this helps.

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I am SO very happy for you skmcornett that it has gone so well & that this has lifted your spirits Mally!!

My chemo was different. A round was 6 (week day) days. It was also 2 kinds of infusion via iv. Monday & Friday were both chemos, the rest were just 1. I only had to see the Drs once a week. I was doing radiation at the same time. Radiation was every weekday for 28 days. Mondays and Fridays were soooo long because that 2nd chemo took about 6 hours to drip vs the 2.5 of the first bag. The chemo "had" to be done first, so the poor rad team got lots of overtime on my behalf.

No one could believe it, but my only side effects of note were exhaustion, loosing 80+% of my hair and nausea if I could smell gasoline. So I stayed away from gas stations! My hubs filled my tank every other day for me. Yeah, I drove from the NJ Shore to Philly for treatment... 90 miles? Yeah. I was still glad it was outpatient! The docs kept asking if I was sure I felt ok because it was "some pretty strong chemo" I was on. Cisplatin & etopiside.

You just can NEVER tell how anyone will react to any treatment. Most of the people I have spoken to tell of experiences more like what you read above. I always pray that anyone I know of can react more like me. I will do the same for you. Promise!

Keep your spirits up! I swear it's what helped me!

Take care,
Mary

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PS. I had a small melanoma removed from my left thigh just over 7 years before the lung cancer was found. They told me if I made it 7 years without a recurrence, I could consider myself cured... yeah. Thanks for THAT! Grrrrrrr
I think, given the choice, I would have preferred the melanoma. Based on my first one being so small, easy to find & easy to remove anyway.

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My sarcoma will be followed for 10 yrs they told me but my lung cancer is a primary so its not related to the sarcoma which strange as it sounds i grateful because sarcoma is harder to treat. How long before my hair will fall out do you think ? Im going to get a wig early on lol

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17 hours ago, skmcornett said:

Mally,

For me, one round = 1 day of treatment, and all of my chemo was outpatient.  Chemo days were long, though.  I started with lab work then to the infusion room so that the nurses could start IV fluids.  Once the oncologist saw me and reviewed the lab work, he'd sign off on chemo and they would start the chemo drugs.  Because I had fluids, two different drugs, steroids, and fluids each time, I was usually at the clinic for 7-8 hours.  I had three weeks between each treatment.

For better or worse, I could predict when the side effects would kick in.  I had chemo on Fridays and felt pretty good until Sunday, when the steroids wore off.  Fatigue and nausea kicked in on Sunday and were the worst on Tuesday.  By Wednesday, I started feeling good again.  The worst one for me was the last chemo - it took a few extra days to feel normal again. 

I hope this helps.

I hope i get to have 3 weeks between doses of chemo and did your hair all fall out with your treatment? Ive heard that not everyone loses their hair does that sound right ?

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46 minutes ago, MaryTD777 said:

I am SO very happy for you skmcornett that it has gone so well & that this has lifted your spirits Mally!!

My chemo was different. A round was 6 (week day) days. It was also 2 kinds of infusion via iv. Monday & Friday were both chemos, the rest were just 1. I only had to see the Drs once a week. I was doing radiation at the same time. Radiation was every weekday for 28 days. Mondays and Fridays were soooo long because that 2nd chemo took about 6 hours to drip vs the 2.5 of the first bag. The chemo "had" to be done first, so the poor rad team got lots of overtime on my behalf.

No one could believe it, but my only side effects of note were exhaustion, loosing 80+% of my hair and nausea if I could smell gasoline. So I stayed away from gas stations! My hubs filled my tank every other day for me. Yeah, I drove from the NJ Shore to Philly for treatment... 90 miles? Yeah. I was still glad it was outpatient! The docs kept asking if I was sure I felt ok because it was "some pretty strong chemo" I was on. Cisplatin & etopiside.

You just can NEVER tell how anyone will react to any treatment. Most of the people I have spoken to tell of experiences more like what you read above. I always pray that anyone I know of can react more like me. I will do the same for you. Promise!

Keep your spirits up! I swear it's what helped me!

Take care,
Mary

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Did you have a lobectomy before starting chemo mary ? Or just doing radiation and chemo ? And thankyou for your prayers too

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My lobectomy was done after the treatment. Sorry, I thought I was babbling, so I left off some of the non chemo stuff.

My tumor was called an apical one, also known as a Pancoast tumor. It is called that because it occurs in the apex - upper tip - of the lung. Mine was in the right lung. I'm right handed... or was. I still am for writing, and often times I reach to do something with right you just to find it can't manage to do what I wanted. Most times its a door knob. Grabbing PLUS turning are too much. I have nerve damage due to the tumor sitting on nerves, or pushing bones onto them. All I know is my three outer fingers are nearly useless and nearly numb, increasing in trouble as they grow shorter.
The surgery actually took 2 different surgeons, a neuro ortho surgeon started by getting parts of three vertebrae out of the way for the the tumor to be free up there. He then used a small rod to keep the remaining bones in place.
The thoracic oncologist then took the lobe, tumor, and ribs. It's late and I am forgetting. 2.5 or 3.5 ribs...
A vertebrae below the rod started to crumble but no matter how much I complained the neuro surgeon said I was fine & the pain docs checked with my hubby to be sure I was taking my pain meds... then upping the strengths.
A year and a day later Mr neuro ortho surgeon went back in. He took out the tiny rod on the right side & replaced it with bilateral (both /two sides) rods going 2 discs above & 2 or 3 below where the 1st 1 was.
As I awoke from that surgery I was in so much pain I couldn't breathe, think, move!! I literally begged them to kill me even though I could see my husband and the fear in his eyes. They gave me some meds until they could get a scan, then they put me out. I don't know with what or any of that. I barely remember being told I needed a new surgery in the morning & I would feel 1000% better in the morning. I guess I signed something or maybe hubs did.

The Dr had bent the rod to match my now very crooked spine... at the end of it, the rod actually straightened itself enough to pull the screw right out of my vertebrae!!

I really hope the cancer never comes back since I'm pretty sure that the threat of another surgery would send me right up a wall! A discussion about maybe inserting a pain pump had me crying hysterically as much as I think I'd do most anything to get out of the never ending pain.

Ugh. See? That's what happens when I start babbling.

I hope for your sake you stopped reading a few dozen lines ago!! Hehehe

Take care & sorry for the extra long answer.
Mary

PS, this was all back in 2011 & 2012.

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22 hours ago, MaryTD777 said:

My lobectomy was done after the treatment. Sorry, I thought I was babbling, so I left off some of the non chemo stuff.

My tumor was called an apical one, also known as a Pancoast tumor. It is called that because it occurs in the apex - upper tip - of the lung. Mine was in the right lung. I'm right handed... or was. I still am for writing, and often times I reach to do something with right you just to find it can't manage to do what I wanted. Most times its a door knob. Grabbing PLUS turning are too much. I have nerve damage due to the tumor sitting on nerves, or pushing bones onto them. All I know is my three outer fingers are nearly useless and nearly numb, increasing in trouble as they grow shorter.
The surgery actually took 2 different surgeons, a neuro ortho surgeon started by getting parts of three vertebrae out of the way for the the tumor to be free up there. He then used a small rod to keep the remaining bones in place.
The thoracic oncologist then took the lobe, tumor, and ribs. It's late and I am forgetting. 2.5 or 3.5 ribs...
A vertebrae below the rod started to crumble but no matter how much I complained the neuro surgeon said I was fine & the pain docs checked with my hubby to be sure I was taking my pain meds... then upping the strengths.
A year and a day later Mr neuro ortho surgeon went back in. He took out the tiny rod on the right side & replaced it with bilateral (both /two sides) rods going 2 discs above & 2 or 3 below where the 1st 1 was.
As I awoke from that surgery I was in so much pain I couldn't breathe, think, move!! I literally begged them to kill me even though I could see my husband and the fear in his eyes. They gave me some meds until they could get a scan, then they put me out. I don't know with what or any of that. I barely remember being told I needed a new surgery in the morning & I would feel 1000% better in the morning. I guess I signed something or maybe hubs did.

The Dr had bent the rod to match my now very crooked spine... at the end of it, the rod actually straightened itself enough to pull the screw right out of my vertebrae!!

I really hope the cancer never comes back since I'm pretty sure that the threat of another surgery would send me right up a wall! A discussion about maybe inserting a pain pump had me crying hysterically as much as I think I'd do most anything to get out of the never ending pain.

Ugh. See? That's what happens when I start babbling.

I hope for your sake you stopped reading a few dozen lines ago!! Hehehe

Take care & sorry for the extra long answer.
Mary

PS, this was all back in 2011 & 2012.

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So sorry for the pain you went through because my pain was the worst id experienced and my lobectomy and wedge section was bad enough but sounds like you went to hell and back with what you went through

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14 hours ago, Tom Galli said:

Mally,

Seeing you are getting some wonderful feedback from Susan and Mary.  This might help you prepare for chemotherapy.

Keep those questions coming!

Stay the course.

Tom

Yes they have both helped my fear tremendously and i truly appreciate it 

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I want to say my hair started falling out a few weeks, maybe even a month, after I started chemo. When it started, it was coming out by the handful. My husband wears a beard, so he has a beard trimmer. I asked him to set it, but on guard attachments, for the longest hair possible. I think his longest setting was around 2 inches.

I was clueless regarding beard trimming & it's tools. He told me that 2" would be about double the length of his beard hair.

Eventually I couldn't stand it anymore & I asked him to trim me. I have an ugly scalp! Until just a couple of months ago, I had a pair of raised cysts, positioned like devil horns, nearly the size of the tip of my pinkie finger... I didn't want to shave!!
When I finally asked for him to trim it with the longest setting in place he hemmed & hawwed about not knowing how to do hair. I finally convinced him that no matter what he did, it HAD to be better than bald! When he did it, I thought it looked like a cute little pixie cut! Maybe tomorrow or the next day I will try to find the picture... I'm sure it must be on Facebook.

As much as its 199% wrong, I tried to make myself believe that loosing my hair proved to me that the chemo was working. Heck, there are plenty of chemotherapies out there that don't make hair fall out AT ALL, so I was being really foolish, but it made it easier for me, so I used it.

I am sorry that you had such horrible pain from your surgery (ies) too! I am sorry anyone even has cancer. I pray they get rid of it for you for good!! 2x is 2x too many in my book!!

Fingers crossed!!
Mary

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The photo was easy to change!

Sorry it's so crumby. My pal took it with her phone in 2011, before camera phones were as good as real cameras!! LOL

Its dated 6/4 so I got mad at clumps falling out at around the 4-6 week mark. It was falling out before then, but got bad then.
?

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6 hours ago, MaryTD777 said:

The photo was easy to change!

Sorry it's so crumby. My pal took it with her phone in 2011, before camera phones were as good as real cameras!! LOL

Its dated 6/4 so I got mad at clumps falling out at around the 4-6 week mark. It was falling out before then, but got bad then.
?

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I cant see the photo mary ....what do I do to see it ?

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It should be my profile picture. I was holding a napkin behind my head as if it were a backdrop.
My old profile pic was a giant close up with a goofy smile. If it didn't work in don't know any other way to show a picture on here....



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Duh!! I am on tap talk or something... the phone app. I don't know if it changes in the regular lungevity program. Grrr. Let me know if that's the issue & I will find my way back to the regular site.

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Mally,

Good morning.  I did not lose my hair during chemo.  The PA at the oncology clinic said I had a 50/50 shot of losing it, but the oncologist said that I likely wouldn't lose it.  I have a friend who took cisplatin for a different type of cancer and he lost his hair.  The PA told me to be gentle with my hair - don't wash it every day, try to minimize use of hair dryers and curling irons, etc.  I hope this helps.

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Molly ;I liked to know if you had vats surgery? And your surgery was only 3 weeks ago right? You have to get stronger and recover first before u get chemo right? I had vats surgery  lower right lobe stage one Aden.clean margins and no lymph nodes involved. I am so thankful. But its been only 6 weeks and my incisions are still sore and when I sneeze I can tell I'm not yet healed inside. I couldn't imagine having to have chemo yet until I would be stronger mentally and physically. It is good to learn everything about cancer and treatments but its also important to recover first with no worries so u can heal.I'm cancer free right now but there is always going to be the fear of it coming back but I still have to heal now and not worry about what could happen. I wish you and everybody the best. And my favorite saying that I learned from Tom is STAY THE COURSE.. God bless!

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